The newest research about living with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (ME/CFS)/fibromyalgia, with personal observations
(the most pertinent parts of long articles will be highlighted for the reader)

About The Author

On March 4, 1988, I was diagnosed with Post-Viral Syndrome, which CDC soon decreed had to be referred to by the silly name "Chronic Fatigue Syndrome". My symptoms definitely traced back to a severe flu-like illness with a 105 fever for several days in mid-February 1987.
Despite relapses and increasing symptoms, I continued to work full-time as a legal secretary/paralegal -- even when I had no Quality of Life because I had to spend every non-working hour in bed so I could work the next day -- until February 2000, when months of severe sleep disturbance and ever-increasing symptoms (due to sleeping 2 hours or less a night due to the pain) cost me my job.
The doctors and judge didn't want to hear about failed attempts to return to work; they just assumed I don't want to work. "Don't confuse me with facts, my mind is already made up."
Since ADA will not force an employer to provide the accommodations I need, I started my own business so I could lie down whenever I needed to. I do proofreading and editing from home.
Visit www.CFSfacts.org or CFS Facts at YahooGroups or on Facebook if you want to learn the truth behind the myths.

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Saturday, December 22, 2007

Pat Fero, one of our Gold Star mothers who lost a child, observes about Ryan’s case:

"Interesting that the mom has stacks of medical letters and records, some of which she scanned for me, that tell Ryan's story. It is unbelievable, really, but I have seen the proof. YES, I know that things can be bad, but I also think after talking to the NC advocate that the GOOD OLE BOYS idea is alive and well in this county in NC. The family lives just down the road from Lapp and Cheney, with Cheney's office in the same office park as many of the MD's she has been dealing with. AND the CFIDS assn is in charlotte. I would bet that the family's experience is backlash...., We have that at the UW - Madison. It is as if the medical people have a bone and will not let go. In fact, the bone grows - an anti CFS sentiment. WHY? Just because? I think it is the CDC and NIH foibles later on messed with us in the trenches. Idiots."

There has recently been a discussion in support group about CFS patients’ ability to trust doctors. We’ve been lied to, subjected to verbal abuse, accused of lying, and refused treatment that would automatically be given to someone with a different diagnosis.

Someone did a research study into placebos and CFS. The placebos didn’t work. There wasn’t even the usual percentage of "placebo effect". On one level, this proves that CFS is not psychosomatic, there’s a biological cause that can’t be fixed with sugar pills. On another level, it raises the question of why there wasn’t the typical placebo effect; talk to the patients and they’ll tell you: we’ve lost faith in doctors. We have been given so many pills that didn’t work as well as the doctor said they would, that we no longer believe anything they tell us. Quite simply, when we’re given yet another pill with yet another hyped-up assurance that "this will help you", we expect to be disappointed. The placebo effect relies on the patient believing the assurance that this is the magic pill; CFS patients have stopped believing what they’re told.

And the medical community has brought this on themselves with the way they have been treating CFS patients for over two decades. They lie to us and wonder why we no longer believe them. They try to convince us that it’s all in our heads and will go away if we just go back to work or exercise or take their pills, and then they won’t believe us when we tell them that work/exercise/pills made us even sicker.

One of the original 1984 patient cohort observed:

"Even if you were miraculously cured tomorrow, how could you ever erase your knowledge of the incredible things you have learned about the routine lapses in logic performed by humans who are confronted with an unfamiliar situation that requires a modicum of reasoning ability? You can never look at people quite the same, after this."

A British activist, the healthy mother of a CFS patient, concurs:

"the rank irrationality I have encountered from medics, let alone other health professionals and the community at large (with a very few honourable exceptions), has knocked me for six on a regular basis. I feel like I'm frequently staring into the abyss of chaos when it comes to doctors' belief systems on this bunch of illnesses!"

A nurse who is now a CFS patient warns:

"I don't think a patient should ever depend on a doctor to take care of them. Sad but true. It is the patient's responsibility to research and be prepared. I would much rather research & be prepared than my family be rich because of a lawsuit. Incidentally, I am/was a RN."

The simple fact is, if your diagnosis is CFS, you can expect to be disbelieved and treated badly (if the doctors give you any treatment at all).

Dr. Kevin P. White observes that "There are many well accepted disorders that lack objective physical findings." It’s not that symptoms of CFS/fibromyalgia are subjective, because "all symptoms are, by definition, subjective." Similarly, all symptoms are self-reported; my father didn’t have to have diarrhea in front of the oncologist to convince him that this was his reason for suspecting there was a problem – he was simply believed at face value. But when I reported diarrhea every morning before consuming anything that might cause such an allergic reaction, the attitude was that if the doctor didn’t see it for himself, I was lying because I didn’t want to work. He even ignored the objective symptoms, because he didn’t want to see any proof of illness.

The first doctor I saw, in 1987, convinced my husband that he didn’t see the things he thought he saw; we walked in with my husband substantiating my reported objective symptoms, and walked out with him convinced that I was imagining things, because the doctor did such a good sales pitch on the notion that there was absolutely nothing wrong with me, and that he could not trust his own eyes and ears. My boss was not as awed by doctors, and kept insisting that there was something very wrong and I had to keep after the doctor until he saw what my boss saw; the doctor refused to see any of the things that were readily apparent to other people.

One of my doctors stated "nothing she said made sense." And that’s true – he was trying to fit my symptoms into the matrix of lifelong depression, and my symptoms refused to be sledgehammered into the compartments he wanted them to fit into. They didn’t make sense in the context of depression. Had he known more about CFS, he would have recognized that everything I said made perfect sense – I was describing all those symptoms that would support a CFS diagnosis instead of a depression diagnosis, because I knew how the two are differentiated and what to say to get a doctor to make the distinction. But instead of researching what symptoms I should have, after being told that I had a specialist diagnosis of CFS, he convinced himself that he was right and I was wrong, and all my previous doctors who made the CFS diagnosis were wrong, and all the psychs who said I lacked the required components for depression were wrong. I was simply confused, and my reports could not be trusted, because I refused to describe the disease he was looking for.

Yet, when I describe the same symptoms in the same way to a CFS expert, he’ll recognize instantly that I was correctly diagnosed with CFS in 1988, a dozen years before that doctor chose to ignore the expert diagnosis and substitute his own erroneous one.

Pat Fero comments "when my son, at age 10 was horribly ill, we took him to the University of Wisconsin Medical Center - Pediatric diagnostic clinic. The end result? I have it in writing....Casey is mimicking his mothers CFS behaviors.......

"I took him back once and as I was leaving the exam area of this large wing, I heard laughter. I had to go by the room. Someone said,"When I heard her say Chronic fatigue syndrome..." Then more laughter from a group of MD's. I stood there with my little boy. Did he hear? Should I go in and rip someone up?

"But no, for the sake of the child, I left. My husband took Casey the third time. The MD was a different guy and a bit better, but they thought Casey was overweight and needed to be on a regular sleep schedule. THIS after a sleep disorder from age...hum...4 or 5 on? I mean who wants a child wandering around in the middle of the night or coming into a bedroom to say....mom I can't sleep...

"So we were done with the big medical center and that was the treatment of kids when Casey was young. He once told me,"She (an MD) did not have the right to tell me what to think and how to feel." THAT MD was a real idiot and my son knew it, but could not process it until a few days later.

"MDs can damage a kid's self esteem."

Actually, they can damage the self esteem of any CFS patient. But when we turn it back on them and say "I’m not going to believe you", "what you say doesn’t make sense", "I’ll believe this pill will work when I see it with my own eyes", they get insulted.

But, observes the nurse/patient quoted above, "if this hurts your feelings, you are being overly sensitive, hormonal, have a anxiety disorder, or blah, blah, blah. Anything except the right to be honestly affronted at this type of treatment." And she’s right. When my sturdy self esteem caused me to tell the doctor he was mistaken, I was not going to be bullied into questioning my observations the way my husband was cowed into distrusting his own eyes, the doctor took revenge. How dare I not knuckle under and accept that just a few minutes after meeting me, he knew me better than I knew myself.

A psychiatrist experienced in treating battered women says that when a batterer tells the victim not to believe what she sees, she doesn’t feel what she feels, that’s emotional abuse. The same abuse is inflicted on CFS patients every day, as they are told that they don’t see the symptoms they see, they don’t feel the pain they feel, just believe the doctor that there’s nothing wrong.

Perhaps some day there will be laws that allow doctors to be charged with a crime for this emotional abuse of the disabled.

Patients, you don’t have to put up with it. If a doctor tries to tell you that you’re not really sick, just lazy or crazy or manipulative or whiny, do not listen to him. Gather up every bit of your self confidence and tell him that the one who is manipulative is him, trying to get you to ignore what you know you see and feel. Then walk out of his office and never return.

Like Pat, I have the proof in writing of how what was in the handwritten notes taken during the appointment or written on forms was twisted around to say something very different when the doctor was dictating the typed notes. I have the proof in writing that doctors lied to disability investigators. Unbelievable, but I have the proof that it’s true, and that proof is available to anyone who chooses not to believe me that my records were doctored more than I was.

And I have the written proof of how a member of the medical community, like a dog with a bone, will not let go of the fact that I speak honestly about medical malpractice where CFS patients are concerned; I've been cyberstalked and verbally abused (including in comments to this blog) for exposing that dirty little secret. Her concern is protecting doctors; my concern is protecting patients. I will live the rest of my life with problems caused by doctors who wanted me to believe that I was not sick, just depressed and lazy, and ignored all evidence to the contrary.

Unlike most women that they're used to dealing with, I was a successful, accomplished professional, and not easily manipulated. They didn't like that I stood up to them. But my concern was not massaging their egos ... it was, and remains, getting well enough to go back to work full-time. If that means I have to tell doctors they're wrong, so be it. It's time they got a taste of their own medicine.

Friday, December 21, 2007

The Big Picture, history, and details are all equally important to know. Here is a 'history refresher' for all, so smarter and better planned and and coordinated illness-specific research efforts lead us all in the future. Particularly important if the USA finally discontinues the 15+ years old ICD9's and finally moves to the ICD10's, where ME once again has it's rightful Neurogenic classification of G93.3. LKW

(There is a brief summary available at the bottom of this article for the ME patients having difficulties reading this rather long article)

ME - Background

"The illness Myalgic Encephalomyelitis (ME) occurred in both epidemic and endemic forms, although it was the epidemics which were easiest to recognize and which caught most medical attention", professor Rachel Jenkins says. [1]

The first recognized epidemic was considered to be Poliomyelitis in a milder form. It occurred simultaneously or following a Poliomyelitis outbreak and it occured in Los Angeles, USA, in 1934. Two orthopaedic surgeons, John Wilson and Pierre Walker, described these cases in 1935 as 'atypical poliomyelitis' [2], and Dr. Gilliam, Office of Epidemiological Studies, US Public Health Service, gave a detailed description of the disease [3].

ME has been described by L.A. Wallis in 1955 [4], E.D. Acheson in 1959 [5], and M. Ramsay in 1986. [6]

During the summer of 1955, the Royal Free Hospital, with a total staff of about 3500, experienced an epidemic of Encephalomyelitis simulating Poliomyelitis which affected more than 300 people.[7]

For the first time, in 1959, the name Myalgic Encephalomyelitis (ME) was used officially for this disease in a article by Dr. E.D. Acheson in the Lancet. [4] "From 1934-90, there were at least sixty-three outbreaks of epidemic proportions, all well documented, and distributed geographically in North America (29 outbreaks), the UK (16), the rest of Europe (11), Australasia (4), Africa (2), and Asia (1). One of the most studied, and possibly the most controversial outbreak, occurred at the Royal Free Hospital, London, in 1955, says Dr. Vance Spence, Universiy of Dundee, Scotland. List of epidemics from 1934 to 1980 The choise of the name Myalgic Encephalomyelitis was due to Dr. E.D. Acheson's [5] findings ofsignsof dysfunction in the Central Nervous System (CNS) when doing an autopsy in connection with research on some epidemic outbreaks. The scientists had no doubt about the neurological character of this disease. Since then there have been mounting evidence to support this [8].

Autopsies on ME patients confirm infection in the basal root ganglia, the latest autopsy performed on Sophia Mirza Wilson in 2006. Sophia Mirza died from ME only 32 years of age after having a horrible time - horrible beyond imagination - being incarcerated in a closed psychiatric ward.

Although first recognized in the US, it was researchers from England who first developed a definition and criteria for research and diagnosis of Myalgic Encephalomyelitis Ramsay 1988.

CFS - Background

In spite of Gilliam, Wallis, Acheson and Ramsay describing Myalgic Encephalomyelitis, new epidemics in the US apparently didn't ring a bell. In 1988 Centre of Disease Control and Prevention in US (CDC) constructed a new definition calling this "new disease" Chronic Fatigue Syndrome (CFS) (Holmes et al), because the researchers found that the symptom "profound fatigue" shared by all sufferers. Chronic Fatigue Syndrome was in fact merely the title of a working case study but for some reason a new and more suitable name for the "condition" never saw daylight.

Some researchers and doctors use CFS (Holmes et al, 1988) and ME (Ramsay et al, 1988) synonymously. However, Holmes' criteria were developed on the basis of some cluster outbreaks, thought to be due to Epstein Barr Virus. The criteria were never meant to cover ME.

When WHO classified Myalgic Encephalomyelitis in 1969 in their international classification of diseases (ICD), it was categorized as a neurological disease and listet in ICD-10, code G93.3 under "Other diseases in the brain". PVFS (Post-viral fatigue syndrome) was placed in the same category under the same code - considered to be an alternative name for ME.

Dr. Melvin Ramsay did not agree on this.

As a result most researchers outside the US called the disease Myalgic Encephalomeylitis (ME), while American researchers continued to call it Chronic Fatigue Syndrome (CFS). A confusing situation, which got worse in the years to come.

The CFS-confusion begins

While researchers in countries outside USA were quite clear about ME, American researchers were still focused on the symptom "fatigue" and not on the neurological and neurocognitive symptoms, which were the main symptoms in ME. [3]

As a consequence CDC, in 1994, found it necessary to revise the Holmes 1988-definition resulting in far more vague and broad criteria for Chronic Fatigue Syndrome Fukuda et al, 1994). These criteria allowed for many conditions, all having "fatigue" as a symptom, including some psychiatric illnesses, and did not include the characteristic neurological and neurocognitive symptoms, described by Ramsay and others before him - symptoms that were of vital significance for the understanding of the disease and for further research and treatment.

However, to treat ME and CFS as synonemous conditions proved to be an unwise move and also most incorrect, because Chronic Fatigue Syndrome, after the CDC constructed the broad criteria in 1994, no longer covered a disease entity, but turned into an umbrella term for several diseases and conditions having "unexplained fatigue" as a common symptom. The new Fukuda CFS criteria was so different from the Ramsay definition of ME, that ME and CFS could no longer be considered synonemous.

The situation is that a patient fulfilling the Ramsay's ME-definition also easily would fulfill the broader Fukuda CFS-criteria from 1994, whereas a patient fulfilling the Fukuda-CFS-criteria would not necessarily fulfill the Ramsay's ME-definition.

Although many ME-researchers outside the US did not immediately adopt the new CDC Fukuda-criteria from 1994, they did, however, in the end spread worldwide within the medical world. Some countries introduced the term ME/CFS og CFS/ME (apparently trying to get CFS - as this term was more and more used among doctors and researchers - recognized as a neurological disease like ME). However, ME was absorbed in CFS, which caused tremendous medical confusion about both ME and CFS - not to forget the trivialization of ME this caused, and still is causing, around the world. Furthermore it made both CFS - and unfortunately also ME - easy targets for psychiatrists, who certainly did their part in trying to convince goverments and health authorities all over the world that ME/CFS is a functional disorder.

The lack of recognition - correct diagnosis - correct medical and social treatment of both CFS and ME patients - and lots of misleading and insufficient research studies, often funded by governments and also insurance compagnies, cause many people - including doctors and researchers - to call this the biggest medicalscandal in history.

WHO classification of ME and CFS

When some American researchers and patient organizations realized the problems connected with the jumble of different diseases and conditions Fukuda-CFS had become, they began to express the need to change the name CFS to ME - implying that they considered ME and CFS as identical diseases.

Some patient organizations, backed up 100% by many European and Australian researchers and patient organizations worldwide, firmly insisted that if the name CFS was to be changed to ME, the Fukuda CFS criteria from 1994 had to be replaced by the Ramsay ME definition from 1988.

Centre for Disease Control and Prevention (CDC), USA, had, however, no intention of changing the name CFS. Later developments revealed the reason. In 1994 the American authority for disease classification (National Centre for Health Statistics) managed to get WHO to place CFS in ICD-10. WHO chosed to place CFS in the ICD-10 Index with reference to G93.3 - same code as ME and Post Viral Fatigue Syndrome.

This CFS reference to code G93.3 is, however, confusing because of the radically changed CFS-criteria (Fukuda 1994), that had little to do with ME.

The psychiatric lobby

When WHO's Collaborating Centre for Research and Training for Mental Health at Kings College in London in september 2001 single handedly placed ME and CFS under WHO's categori F48.0 (Mental Illnesses) in their "Guide to Mental Illness in Primary Care" and on their website, it upset the ME and CFS communities all over the world. A rapid respons was to contact both King's College in London and WHO Headquarters in Geneva in order to draw their attention to this misclassification.

WHO Headquarters in Geneva, made aware of the problem, stated that this disposition was not in agreement with WHO's classification principles. The WHO Collaborating Center at King's College was then ordered to instantly remove ME and CFS from their brochure and from their website.

This led to ME and CFS being removed from the headings in the brochure "Guide to Mental Health in Primary Care". In a paragraph named "Differential diagnosis", the King's College psychiatrists apparently tried to take advantage of the current CFS classification. They did this by suggesting ME is the same as CFS (which was classified under ICD-10 code G93.3 under neurological diseases) but that this classification is doubtful on the background of the asserted good results from treating CFS patients with CBT (cognitive behavioural therapy) and GET (graded exercise therapy). Later it became known, that 30,000 "Guide to Mental Health in Primary Care" were already sent out in 30,000 samples without the requested corrections. A correction slip was produced but this slip didn't reach all who recieved the Guide.

Next move

This situation was brought up by the Countess of Mar in a debate in the House of Lords in the English Parliament, January 22, 2004, because King's College, after first attempting in their revision of the 1. edition of "Guide to Mental Health in Primary care", placed ME and CFS under two different categories - under G93.3 (diseases in the brain) and under F48.0 (mental illnesses) - then attempted to suggest that both diseases are functional illnesses.

Directly asked, Andre l'Hours (responsible for WHO ICD) and Dr. Sereceno, WHO Headquarters in Geneve, clearly stated that "WHO has not changed its position on these disorders since the publication of the International Classification of Diseases, 10th Edition in 1992 and versions of it during later years." "Post-viral fatigue syndrome remains under the diseases of nervous system as G93.3. Benign Myalgic Encephalomyelitis is included within this category. Neurasthenia remains under Mental and Behavioural Disorders as F48.0 and Fatigue Syndrome (note: not the CHRONIC FATIGUE SYNDROME) is included within this category. Post-viral Fatigue Syndrome is explicitly excluded from F48.0 as - according to the taxonomic principles governing the ICD-10, it is "not permitted for the same condition to be classified to more than one rubric".

(Andre l'Hours' and Dr. B. Sereceno's statements can be reached by clicking on this link) (see original thru link at the top)

Collaborating Centre at King's College hereafter promised to make the required correction in the 2. edition af their guide, which was expected to be published primo 2004.

In February 2004 the 2. edition of the guide was published and now surprisingly named "Guide to Mental and Neurological Health in Primary Care". What the King's College psychiatrists had done now was:

The terms "Postviral fatigue syndrome" and "(benign) Myalgic Encephalomyelitis" are used in cases where a pronounced fatigue has occured by a specific trigger like a virus and/or where the symptoms do not fullfil the criteria for category F48.0.

"Fatigue syndrome"both chronic and not chronic, with or without a clarified physical marker, are classified under "Neurasthenia", F48.0. In the section about CFS or CFS/ME it says:

"Chronic fatigue syndrome (CFS or CFS/ME). G93.3.

-->Actually, the term "CFS/ME' denotes the Wessely Schools psychosocial illness MODEL, and it is not recognized by the WHO. LKW

CFS is usually also referred to as (benign) Myalgic Encephalomyelitis or ME. There exists a spectrum of illnesses which together with other forms of conditions and symptoms is characterized by abnormal and unusual forms of fatigue. Whether these represent distinct entities or a variety of a common theme is uncertain. Ethiology and pathogenesis are not always known. The terminology is therefore a problem."

Other neurological diseases are included in this guide (i.e. Multiple Sclerosis and Parkinsons), which has led to protests from specialists within the neurological field. In other words - the psychiatrists still tried to code ME and CFS within the Mental Illness category - without any scientific documentation to back it up. A serious consequence was that significant medical journals became biased in more than one way. They would only accept research studies on CFS broadly defined by Fukuda 1994 arguing, that these criteria were now the internationally accepted, and furthermore they seemed to prefer studies with a psychiatric angle to CFS. In order to have their work published, researchers, who actually performed research on ME, had to call it CFS. This made it difficult for significant scientific findings to be specifically linked to ME or to CFS. Also, it led to even more confusion about the correct understanding of them both.

Lately there seems to be a tendency within psychiatry to use Chronic Fatigue (CF) to infiltrate CFS in a way that make people believe, that CF and CFS are the same thing. Research studies on CFS are often done on CFS patients but called CF, or the other way around.

When WHO released the 2006 revision af ICD-10 on their website, it gave fuel to alot of speculation since CFS seemed to have disappeared from the ICD-10 classification. Rumors began to circulate. However, the presumption, that seems closest to the truth is that ICD-10 Index (where CFS was placed) was never shown on the Internet version of ICD-10, but would still appear in a hard copy version. So far it has been impossible to get this theory - or any other theoray for that matter - verified.

Changes underway?

Almost at the same time (Summer 2006) CDC changed their CFS website, and after having erased Myalgic Encephalomyelitis from the latest version of their ICD-9CM, arguing that this term was not in use in most countries anymore, ME appeared on the website again. On the website it was, however, explicitly emphasized, that ME and CFS were not considered the same entity, but that Myalgic Encephalomyelitis was considered 'a similar disease' to CFS.

While WHO is working on ICD-11, CDC is still working on their ICD-10CM. A draft of the new CDC ICD-10CM has been published on CDC's website and interesting modifications appear to have taken place.

It is worth noticing that Myalgic Encephalomyelitis is again mentioned in CDC's ICD after having been missing for some years. Also, it's worth noticing that CDC, in this draft of ICD-10CM, consider ME and CFS as being two different entities - as it is also emphasized on their website on CFS.

While these lines are being written the CDC ICD-10CM draft still remains to be approved and some changes can still occur.

Conclusion

If this version of CDC's ICD-10CM gets approved, it will be up to those countries using the name CFS or ME/CFS, to get the CFS and ME mess sorted out and distinctly separate CFS from ME - and also distinctly separate the diseases and conditions covered by the CFS umbrella term from each other.

Because of the worldwide confusion about ME and CFS amongst physicians and health authorities - and patients for that matter - it is of vital significance to clarify and emphazise the difference between these two. We need a new era where correct medical information about what ME is - and certainly is not - is highly needed. The same goes for CFS.

~

Published on ME/CFS Postlisten Oct. 6th 2001 with permission from the author. Revised October 2006

Summary

1934: Since1934 several detailed descriptions of Myalgic Encephalomyelitis (ME) have been published.

1955: ME simulating Poliomyelitis first gave it the name 'atypical Poliomyelitis' in the 1950's. Later the name ME was chosen due to Dr. Acheson's findings of signs of dysfunction in the Central Nervous System when doing autopsy in connection with research on some epidemic outbreaks. The neurological nature of the disease was never in question.

1969: Since 1969 WHO has listed ME under the category "Other diseases in the brain" under code G93.3.

1988: The term Chronic Fatigue Syndrome was created by Centre for Disease Control (CDC) in the US in the 1980's on the background of what was thought to be Epstein Barr Virus outbreaks and the criteria chosen for CFS in 1988 were therefore never meant to cover ME although many doctors, not being experts, considered the criteria to be identical to ME.

1994: Because physicians and scientists focused on 'fatigue' more and more instead of on the neurological symptoms, certain pyschiatrists began to show a huge interest in CFS and had more and more influence on the perception of CFS. As a result CDC decided in 1994 to revise the 1988 CFS criteria. Had there been any resemblance between ME and CFS before it totally disappeared with these new criteria, which made CFS an umbrella term allowing the inclusion of alle kinds of diseases and conditions having 'unexplained fatigue' as a major symptom. WHO listed CFS (apparently with the understanding that CFS was a similar disease to ME) in IDC-10 Index with reference to code G93.3. The psychiatric influence continued to grow and because the psychiatrists considered ME to be synonymous to CFS, ME little by little got 'melted' into the term CFS, having a still bigger impact on how ME was understood and treated. Also along the way money was only granted for research studies in CFS, and ME slowly became 'displaced' and at the end receiving no more funds for research. This was due to the gigantic and widespread confusion about what ME was and what CFS was. The ME sufferers have paid a unacceptable high price because of this - by many called the biggest scandal in medical history.

2001: This was the year when the psychiatric lobby tried single handedly to classify ME and CFS under the WHO category of Mental Health (F48.0), considering them both to be functional disorders. Thanks to worldwide protests WHO managed to prevent this happening. But WHO's Collaborating Centre at King's College in London managed to publish "Guide to Mental and Neurological Health in Primary Care", including both ME and CFS and claiming that the terminology was 'uncertain' as 'ethiology and pathogensis was not always known'.

2006: After having been erased from CDC's IDC for years, ME was again mentioned in CDC's draft to their ICD-10CM and claimed not being considered identical to CFS but as a 'similar disease'. At the same time, the CDC seem to struggle with the many different varieties of 'fatiguing conditions' in their classification system, including psychiatric disorders.

What we must create now is a new era where correct information about what ME is - and certainly is NOT - must be widespread. - This goes for CFS as well.

[3] Epidemiological study of an epidemic diagnosed as poliomyelitis occurring among the personnel of the Los Angeles County General Hospital during the summer of 1934. Public Health Bulletin No. 240, April 1938.

[7] An investigation into an unusual disease seen in epidemic and sporadic form in a general practice in Cumberland in 1955 and subsequent years Dr. A.L. Wallis" M.D. Thesis, Edinburgh University, 1955 This Edinburgh Definition, with modifications by Dr. Melvin Ramsay can be read at Nightingale Research Foundation's website)

Spence VA, University of Dundee, RSE/Wellcome Trust Research Workshop: ME/CFS: A research and clinical conundrum, October 3rd, 2003 Oxidative stress levels are raised in chronic fatigue syndrome and are associated with clinical symptoms With a comment from ME Research UK.

Thursday, December 20, 2007

This is the story of a lady who had fibromyalgia before it was invented and who is leading the way raising awareness with the medical profession. As a patient she is giving medical students an insight about living with fibromyalgia and long term pain.

Linda Allen, the mother of two children, who lives in Stoke on Trent, Staffordshire, also suffers badly with back problems and is waiting for surgery. She was diagnosed with fibrositis 20 years ago, before it eventually changed its name to fibromyalgia.

Working very closely with her own GP who is also involved in the local hospital and the Primary Care Trust, Linda has twice talked to medical students about long-term chronic pain and her fibromyalgia. The students have been invited to ask questions about her pains, medical history and the effect the syndrome has on her lifestyle.

Linda described her doctor as her 'lifeline'. Her GP spends one day a week at the local hospital's pain clinic and has a good insight into chronic pain disorders. "She really listens to my point of view where treatment is concerned and this is worth its weight in gold" said Linda.

Linda admits she has a fantastic doctor and together they work to raise awareness about fibromyalgia and long term chronic pain, which will ultimately benefit future generations.

THE MED STUDENTS

At the beginning of the year Linda talked to 1st year medical students who were supposed to be doing a question and answer session on 'living with chronic illness and the impact of it on family and friends'. "When we got started they were terrified of me. Apparently they were expecting a little old lady or man with diabetes because that is the most common chronic illness around these days. We got on fine but they had never heard of FMS so the subject matter was only touched on really. We spent well over an hour chatting about fibromyalgia and all that entails. I must say that they were very interested and gladly took the information I had printed for them.

They said they were considering using FMS as part of their research for this year's studies. "They must choose a medical condition to do a paper on and because of the complexity of it all, they seemed quite keen to learn more. I thought that it went really well," said Linda.

She is also hoping to give a talk about 'a letter to normals', which sums up how fibromites feel and other folks reaction the patients' problems. The letter was included in the information she handed out during her first meeting with the medical students. The Letter to Normals can be found here http://www.fibrohugs.org/index.php?option=com_content&task=view&id=10573&Itemid=164

Linda added, "I have now compiled a sort of portfolio for when I talk to the 3rd year students so they can take the information away with them instead of relying on scribbled notes."

Last week for the second time Linda answered her doctor's request and spoke freely about her condition to more 1st year medical students. "They needed a person who lives with a chronic illness, to interview and talk to. I usually start the talk by saying to all the terrified faces in front of me that they have no need to worry. These students also had never heard of FMS which was no surprise and they were very interested in all it." When they were feeling more relaxed with Linda she chatted about what they want to achieve from the interview and questions and answers. Again she provided printed information, which she downloads from her computer and invited questions about fibromyalgia. Linda added, "I give them web addresses and my own email address and telephone number. I assure them I really do not mind further contact from them with any questions they may have thought about later or if they need to clarify any points made on the day."

During the informal chats Linda said her GP leaves her alone with the students in one of the rooms at the local surgery. "When we have finished the GP spoke to the medical students about what they had learned and answered questions they had following the interview. One male student who prior to the meeting said he had no clues as to which direction he wanted to go regarding his medical career, later expressed an interest in becoming a GP," she added. "Perhaps I made an impression. I gave them each a copy of the FM FaMily magazine as it contains plenty of information. I was with them for just over an hour but to be honest I felt that they would have sat there for the morning if possible. They were very interested in the condition, how it affects daily life and all the other connotations it brings, effect on family, quality of life and the medical professions responses to the condition and varying treatments etc.

"My Doctor said the medical students were really pleased with how it went and more importantly the students thought it was very informative and that I was a well informed patient who was totally approachable. This made the whole talk time very beneficial to them. It also gave them good practice in a patient doctor situation where they could ask questions and pick my grey matter and in response get the answers they needed to make notes for later" said Linda. She again offered post meeting contact information, which was appreciated.

Linda told me having a little known condition, which falls into the chronic illness category, this gives many of the students their first contact with FMS and that can only be good.

This week Linda was on cloud nine and wrote, "I cannot contain myself! I have just opened my emails and have one from one of the students I met on Friday. He expresses a keen interest in FMS and says he wants to keep in touch if possible, how about that? He has been looking up information using the notes that I gave him, and says and I quote 'I am finding out so much about this condition and would like to keep in touch, if you don't mind, as I wish to find out more'.

"What a breath of fresh air he is! If the future of the medical profession rests with young men such as this medical student then I feel much more confident about our future as sufferers of this pain in the butt condition which we share. My GP really is a darling. I have assured her I really don't mind doing anything that raises awareness so I may be doing a lot more in the future.

ALL ABOUT LINDA

"My mum and other close family believe I was showing symptoms of fibromyalgia in childhood though, especially in my teenage years. I was an extremely sporty child and threw javelin, played netball at county level and also ran cross country for Staffordshire. I played hockey for my school as well as badminton and rounders and rode and looked after horses," she said. Now she also has spinal and disc problems that may be attributed to competing with the javelin.

Her symptoms of FMS became more obvious at the age of 18 while working in the pottery industry. "I swopped to an office job as a radio controller by day and was a barmaid at night so always had a really busy and hectic life with at least 2 jobs, most times 3. Fibromyalgics are never lazy folk - always very active. That is why I think it is so cruel as it only strikes the people it seems to hurt the most. You never meet a lazy fibromite who has had an easy life or a slow one either. "My big turning point (trauma) was the death of my gran to whom I was so very close. I still miss her now and cry when I talk about her or look through old photos. This is silly, as it was so long ago but that is how close we were. When she died I collapsed and did not even make the funeral. I could not move. That was my definite trigger into the world of FMS. I have had it so long and when I was diagnosed it was still called fibrositis."

"I worked until I was 30 years old when I got a severe case of chickenpox (anything viral is murder for us fibromites) and I was never the same again. I had the chickenpox for months on end, as my immune system was so low. I just kept getting re-infected every time I made any progress at all. This finished my working career and stopped me taking part in most of the physical activities. I had always enjoyed my whole life, and this was a devastating blow as you can imagine. I am and always have been such an active person," said Linda.

"Twenty four years down the line I still have not quite got this 'pacing' quite right. It is soooo hard to live in a body that hurts so much and will not do the things we love to do. As I sit here now the pain in my legs from just touching the seat of the chair, is nearly unbearable. But it is a good job I am as stubborn as I am and nothing will ever beat me or keep me down for long. I am certain that my strength of character and sheer determination has helped.

"A doctor once said to my husband that the only reason I was not in a wheelchair at that time was the determination that has kept me upright a lot of times when I am sure I should have been flat out,"

said Linda. She told me, "Thinking back about those days all makes me tired just remembering."

Ever the optimist Linda recently wrote, "A friend of mine has been popping over to Spain this last 6 months and staying in a place near Playa de Las Americas (Tenerife) with a few Salt Lakes around and its a natural spa. When you have been staying there for a few days apparently all aches and pains just go away!!! We need to get a week or even a month there on prescription from the NHS Jeanne, I wish!!! Sounds good though eh?"

Linda who is now severely disabled with fibromyalgia and serious back problems, has my great admiration, for in spite of all of her pain she is leading the way to raise awareness in the hope that tomorrow's GPs will be able to diagnose FMS more easily. Linda, you are a great example to us all and what a star you are. Keep up the good work.

If anyone else is willing to talk to medical students about their fibromyalgia, print out this article and send it with your request to your local Primary Care Trust (address in your telephone book) and tell them you want to raise awareness.

Maybe if you have a fantastic GP, he or she will help you too.

A final message from Linda - if you need any guidance or advice with your 'giant step for fibromites' she is happy to 'talk' to you by email. Write to lindajaneallen@hotmail.co.uk

If you have any success do let me know and I will write about your interview with tomorrow's GPs. Good luck to you wannabe fibromyalgia speakers and keep up the good work Linda.

In the US, contact your local medical school and/or teaching hospital about volunteering to do the same. The more we can get them, as students when they’re not limited to 7 minutes per appointment, to listen to the whole truth at great length, the easier it will be for them as doctors to process the information that they’re getting (and don’t have time to get) about how this affects a patient’s entire life and why the patient who looks so healthy sitting on the exam table cannot work full-time.

Too many doctors are misinformed that a CFS diagnosis requires total inability to do anything, and that if you aren’t carried into the office, you can’t have CFS. I have days when I am bedridden, but I also have good days when I can spend an hour at the grocery or WalMart. With no one to carry me, I couldn’t show my doctor what a bad day looks like, therefore, he saw me at my best, sometimes the only half hour that day that I was capable of being out of bed. Let’s teach them that what they see may not necessarily be the whole truth. In the course of an hour or two answering their questions, they will see for themselves that the person who arrived looking "not sick" goes downhill fast and is clearly wiped out by the end of the session – something they’ll never see in a brief appointment.

One thing that I think is worth bringing up at least briefly is some of the misconceptions doctors have about SSDI – enlighten them that it’snot enough to live on (usually below minimum wage), it’s not automatically granted just because the doctor signs a form, patients are re-evaluated every few years to see if they can return to work, and that the standard is not whether the patient can do "a little" work now and then, but whether the patient can maintain employment (both acceptable productivity and being there 5 days a week, 8 hours a day). I had one doctor who thought because I could type one page that was proof I could work, and many doctors think that once you’re on it, it will continue even if you recuperate fully.

Frankly, if my goal were to live well without working, I would have gotten more money and more benefits more easily by having a child as a result of a one-night stand – with Welfare, you get Medicaid immediately; with SSDI, you have to wait two years after being approved before you get medical assistance.

Another story of how the CFS diagnosis causes discrimination. As Jodi Bassett has written, if you can get an ME diagnosis, do so, because it sounds more like a real disease and will avoid some of the mistreatment suffered by CFS patients.

After my son Casey died on July 4, 2005, I totally discontinued taking calls from families because I did not want parents to perceive that the future of their children with CFS might be this devastating. However, a North Carolina mom, Lisa, did call me with condolences and questions about accessing better medical care for her son Ryan.

I want to tell you a bit about Ryan, a child I have been following since he was 12.

Ryan was a soccer player who suddenly became too ill to stand. He was in programs for gifted students and excelled in school. Ryan is now 15. Mom and Dad have covered the North Carolina MD's, taken this kid out of state, sought help through Senator Dole's office, and, after numerous complaints against the school district for lack of accommodations, decided to home school.

Ryan has severe dysautonomia. He also has a tic disorder that started after a reaction to a medication. Ryan has a diagnosis of CFS. He is very weak, cannot go to school, has trouble with numbers and reading and sometimes just gets "stuck." Lisa says that when Ryan is "stuck," he literally stops and does not talk. He cannot process information. He needs help to move.

Ryan is often too weak to use a regular wheel chair. Insurance is denying the motorized wheel chair prescribed by an MD, and fitted for Ryan by a medical supply company that originally had a work order *from* the insurance company to go to the home and fit a special chair. Why would that happen?

Once the company fit Ryan and the chair was made, the MD in charge dropped him as a patient. Another MD took over, a specialist, who signed off on the final order form and continues to advocate for the wheelchair. The insurance company sent a Physical Therapist to again determine medical necessity. Now, the medical supply company says that the insurance company is requiring more paperwork. I think that the family insurance company appears to have red flagged his medical care and is questioning everything. Ryan's wheelchair sits in a warehouse in Charlotte, North Carolina.

Ryan has not had a primary care MD since April. The mom and dad are right on the front line to get everything they can to help Ryan, but system and system has closed the door. Most recently, social services has an allegation against the parents, apparently from an MD. Lisa opened her home for the social worker, wanted an advocate there and a copy of the allegations (not the source, but nature). The county insists that they do not have to reveal the allegations and can, without a release, procure Ryan's medical records since birth.

Lisa and her husband Rod, with help from friends and family, have hired an attorney to deal with social services. I am sorry that the family has to go through this invasion, but I am not as concerned about this as I am about other issues. Lisa is a meticulous record keeper and being a social worker herself, she knows her way around the system.

What I am concerned about is the bias, almost reactionary behaviors, perpetrated on this family that started when Ryan got the CFS diagnosis. 4 years ago, I told Lisa to avoid the CFS diagnosis, as it would go poorly for Ryan. Now in 2007, the institutional bias over CFS has the family looking at what I consider medical malpractice and discrimination based on illness. This is familiar to all of us.

Two things are important right now. Would you go to the website that Lisa just set up, take a look, and then e-mail Lisa words of encouragement? A show of support says, HEY, we are watching this storm! Furthermore, Lisa is well and CAN speak for the attempts to make Ryan disappear because she has all the documentation one could ask for to make her case. I think, with support, Ryan's story could help all of us. Lisa tells me that no one should have to endure what her family has for the last 4 years.http://parentsagainstmedicalabuse.com/

Secondly, Ryan needs to get his wheel chair. Lisa might be open to some sort of insurance company action or a petition to tell this nationally known company that it might be in their best interests to pay for the chair. It is just plain stupid to have the equipment sitting in a warehouse when it was designed specifically for Ryan. I am not able at this time to spend more hours working with the family, and my expertise is limited. However, a combined effort from people with CFS who understand these issues would be most appreciated.

Most people surf the interenet for information. Now there's a way to help research with every search you make! Instead of using Google, try using www.GOODSEARCH.com. If you list the National CFIDS Foundation as your charity of choice, every time you click on to do any search, a penny is donated. Every click means you have helped fund research into CFIDS/ME!

After the first time you log-in for your search and list your charity, GOODSEARCH will list the charity of your choice automatically making it as easy to use as any search engine but having an added benefit.

Thank you for helping us advance and fund research! And an added thanks to all who shopped online and used the mall at http://www.iGIVE.com for their holiday shopping. The percentage given to the National CFIDS Foundation goes toward funding research as well and they've notified us that another check is on its way.

Reply to an article in the Daily Mail about post-polio syndrome (link belowmy signature), which should be of interest to some of us here.

e-mail address if you're not too busy stuffing turkeys - either with sage &onion or into your mouths! - is letters@dailymail.co.uk

CheersJohn

Daily Mail Letters.

The theory that M.E. ( Myalgic Encephalomyelitis) is caused by a persistentvirus, or one that remains dormant, or recurrent, whether it is Post-PolioSyndrome (PPS), is not quite as new as the title of Victoria Lambert'sarticle ( After polio, a new condition now causes crippling pains ... anddoctors can't treat it, Daily Mail, 18 December 2007) suggests.Nevertheless, hers is a more intelligent piece than M.E. sufferers andresearchers are accustomed to, containing the sort of thinking that is morelikely to lead us to the cure we all hope for.

The similarities are tantalisingly inviting: the estimated number ofsufferers is about the same; the presence of inflammation is common to bothand the symptoms of exhaustion and muscle pain are remarkably similar.

It puts M.E. research squarely in the 21st Century. It is most logical to,first, seek an explanation for medically unexplained symptoms and thensuggest appropriate treatment towards cure instead of following the DarkAges approach, as we do now, of disbelieving that M.E. exists or attributingit to a psychiatric cause, rather than admit ignorance and offer onlyineffective management techniques of Cognitive Behaviour Therapy (CBT) andGraded Exercise Treatment (GET) because that is all there is available andwhich maintain the number of people remaining ill, provides employment forpsychiatrists and satirical comedians and keeps M.E. sufferers the butt ofcruel stereotypes and myths.

After polio, a new condition now causes crippling pains... and doctors can'ttreat it

By VICTORIA LAMBERT

When mary McCreadie was 38, she developed such severe aches and pains in her arms and legs that she couldn't walk or even lift a cup of tea.

"It sounds dramatic, but I thought I was going to die," she recalls.

As it was, Mary, a musician, spent the next four months in bed, sleeping 18 hours at a stretch.

Her GP was unable to diagnose the illness, but Mary convinced herself it was the result of working "ridiculously" long hours.

Pain: Millions suffered from polio in the 20th Century and now there's a new condition

She was referred to a Harley Street specialist who said it was ME. Mary followed the medical advice and rested as much as possible.

Her condition gradually improved and eventually she was able to take a degree in literature and music. But the effort exhausted her, and ten years ago, she collapsed with the same symptoms as before.

From being able to walk her dogs for five miles a day, she was reduced to using a wheelchair to get around.

The instability of her muscles also left her with a severely arthritic hip. Her beloved piano had to be sold because she was no longer strong enough to play it.

Then, three years later, after fruitless visits to numerous experts including immunologists, neurologists and physiotherapists, Mary saw an ME expert — 18 years after her first collapse — who said she didn't have 'yuppie flu' at all, but post-polio syndrome (PPS).

"It was a blow, yet I was relieved," says the 57-year-old from St Briavels, Gloucestershire.

"At last, I knew what was causing the myriad aches and pains so many doctors had dismissed."

Mary is one of around 120,000 Britons who suffer from post-polio syndrome. Despite the numbers affected, very few doctors know much about it.

They've assumed, like most of us, that as the polio virus itself has now been eradicated in this country, it is a health concern of the past.

But the long-term effects of the disease — rife in the UK in the Fifties — can be as debilitating as the disease in its early stages.

Post-polio syndrome is the name for a collection of incurable symptoms — including muscle wastage, muscle and joint pain, and mental and physical fatigue — common to many who have suffered from the full-blown disease.

When the symptoms recur, it may be 20-40 years after the initial disease. Circulation may be impaired and breathing can become difficult due to weakening chest muscles.

Everyday life becomes difficult — even muscles not weakened by the polio become fatigued.

"Our bodies degenerate with age," explains consultant neurologist Dr Stephen Sturman of City Hospital in Birmingham, who has a particular interest in PPS.

'If you've taken a hit earlier and already lost a large number of nerve cells, you only need to lose a few more and you'll notice the effect.

"This is what we call neurogenic weakness — one of the causes of PPS."

Another possible cause is inflammation in the nerve cells, brought on by the immune system's response to the original infection.

Sometimes it can be caused by a complication of the earlier polio — for example, the spine may have been left twisted, which causes premature ageing of the vertebrae.

As a result, up to 70 per cent of post-polio syndrome sufferers live in constant pain, according to a survey soon to be published by the British Polio Fellowship, a charity set up to support people with polio or post-polio syndrome.

However, it takes an average of six years for anyone with the syndrome to get a proper diagnosis.

There are also very few centres where they can seek specialist help.

The complication in Mary's case was that she wasn't officially diagnosed with polio as a child.

She was nine when she contracted a mystery virus that had caused a high temperature, a stiff neck, an aching head and partially paralysed her left side — all classic symptoms of polio.

Doctors visited Mary every day for three months, yet no one mentioned polio. It wasn't until she mentioned this 'mystery illness' to the consultant with expertise in ME that PPS was diagnosed.

This is not unusual — there are a small but significant number of polio sufferers who do not have the typical paralysis and instead present with flu-like symptoms.

However, Hilary Boone, 60, should have found it easier to get a diagnosis of PPS. She knew she'd suffered polio, aged five, in 1952.

Her condition was severe; she was partially paralysed from the waist down, and had to learn to walk again. However, through sheer determination she became a swimming teacher, a lifeguard, gained an orange belt in judo and even joined the police force.

Then, 20 years ago, Hilary slipped on a school floor. The simple accident left her with a weakened body which doctors could not explain.

Her muscles lost strength, she felt tired constantly, yet every doctor she saw told her there was nothing wrong. Finally in 1995, Hilary mentioned her childhood illness to a locum doctor.

"There are some late effects of polio," he told her. "You need to see a neurologist."

It took a further two years to get a diagnosis of PPS, and the delay, she believes, may well have cost her years of good health.

Hilary has since set up an organisation to help other sufferers, the Lincolnshire Post-Polio Network, and given five international presentations on the syndrome to doctors.

But she is disappointed that she has been unable to make headway with the British medical establishment.

It seems PPS is often simply not on anyone's radar.

Nursing Standard, the weekly magazine for nurses, has just published a report suggesting ignorance is the problem.

Before the introduction of the polio vaccine in the early Sixties, the Standard points out, there were regular outbreaks of polio.

NOW the sufferers of these outbreaks are filling waiting rooms needing procedures such as MRI scans others of their age do not, yet doctors simply don't recognise that they need special care.

Indeed, the medical profession seems reluctant to admit the syndrome exists, thanks to a study by the Mayo Clinic, in America, published in the Lancet ten years ago.

Based on research into 50 polio survivors over five years, it claimed the syndrome was much rarer than previously thought.

This caused many doctors to dismiss their patients' claims, yet several leading neurologists have since cast doubt on the findings.

Dr Sturman believes the scepticism arises because there is no clear test for the condition.

However, he says, new tests are beginning to show some kind of "unique abnormality" in the affected nerves of PPS sufferers, perhaps paving the way for neurological tests.

Fast diagnosis is important, as some elements can be reversed — the right physical support can keep a weakened leg muscle going longer, so the patient will be less likely to fall over and break a bone.

Graham Ball, chief executive of the British Polio Fellowship, says: "Sufferers need access to a pain clinic, but also need to see specialists about their muscle wastage and atrophy."

Hilary's challenge is to get the diagnostic process simplified and speeded up.

"We need to change the way we manually test muscles — they should be tested to the limit of endurance, not to an arbitrary figure. And sufferers need to speak up more, too."

Her lowest point came when she learnt that one doctor had marked her down as a fantasist -- that her suffering was all in her mind.

"That was simply cruel," she says.

Mary McCreadie, too, was told she was a malingerer and that her illness was imaginary. Now, seven years on from her diagnosis, Mary is positive.

"Yes, the future is daunting," she admits. "With more support from the medical profession, I am sure I could have lasted longer without needing a wheelchair and suffered less mental anguish.

"But there are plenty of people worse off than me, and the hospital I use now, Nevill Hall in Abergavenny, is fantastic.

"I have lots of friends, I can still listen to music and go to concerts even if I can no longer play. I have a pretty full life considering."

A very happy Christmas and all the best for the New year. Thank you all for your precious work on "our cause". As you may know, the situation in Germany - and in Europe in general - is still very bleak, so we are very grateful for the research and good news coming from your countries.

Yet, there is a small contribution from Germany:Hans-Michael Sobetzko has produced a new CFS/ME cartoon calendar. You may download it (for free, of course) here, and please, click on the ENGLISH version:

In order to demonstrate the international network we'd like to set up a "competion" with photos of the places where the calendar is used and which are the furthest away from Germany. So please, if you like to join this, print out the calendar and take a photo of the place where you use it - and send it to info@cfs-aktuell.deWe will then produce a photo gallery on our websites!